Clinician Perceptions of Family-Centered Care in Pediatric and Congenital Heart Settings

Key Points Question What factors are associated with clinicians’ ratings of family-centered care in congenital heart centers? Findings In this cross-sectional study of 212 clinicians across diverse roles, confidence responding to families’ psychosocial needs was associated with clinicians’ perceptions of family-centered care. A greater sense of personal accomplishment, a key factor in assessing burnout, was associated with higher scores for treating people respectfully and interpersonal sensitivity. Meaning These findings suggest that improving clinician confidence and well-being may benefit clinicians and also strengthen family-centered care in congenital heart settings.


Introduction
Family-centered care involves integration of the family in the health care of children to optimize health outcomes. 1This approach includes bidirectional communication of information between clinicians and family members, shared decision-making, and continuity of care for children and families through all stages of disease management. 2,3Family-centered care is associated with improved outcomes for patients, including fewer emergency department visits, 4 and greater quality of life, 5 as well as improved parent and family well-being, 6 better understanding of their child's health condition and treatment options, 7 increased uptake of appropriate health services, 8 and greater satisfaction with clinical care. 9r clinicians, successful delivery of family-centered care is associated with improved communication and collaboration between colleagues 10 and with families, 11 as well as greater workplace morale 12 and work engagement. 13Despite the many demonstrated benefits, familycentered care can be challenging.On an individual level, family-centered care may require skills that extend beyond clinicians' expertise, such as identifying and responding to families' psychosocial needs. 148][29][30] Thus, the aims of this study were 2-fold: (1) to explore self-reported family-centered care practices and associated factors among clinicians working in pediatric and congenital heart settings; and (2) assess clinicians' confidence in responding to the psychosocial needs of patients and families affected by congenital heart disease (CHD).We hypothesized that clinicians who reported greater burnout (including emotional exhaustion, depersonalization, and low personal accomplishment) would report lower family-centered care. 31

Measures
The WithCare Health Professional Survey included validated and study-specific measures, selected based on a thorough literature review and the National Academy of Medicine Conceptual Model for Clinician Well-Being and Resilience. 32The survey was tested in 5 rounds of piloting with clinicians from psychology, pediatric cardiology, cardiac nursing, anesthesia, and social work, with feedback from each round incorporated to improve survey flow, optimize study engagement, and reduce participant burden.
The primary outcome, self-reported practice of family-centered care, was measured using the validated and widely used Measure of Processes of Care for Service Providers (MPOC-SP; 27 items), 33 which assesses pediatric clinicians' perceptions of the extent to which they provide family-centered care across 4 domains: showing interpersonal sensitivity (10 items; Cronbach α in the present study = 0.94), treating people respectfully (9 items; α = 0.93), communicating specific information (3 items; α = 0.85), and providing general information (5 items, α = 0.92).Statements about interactions with patients and families in the past 12 months are rated on a scale from 1 (not at all) to 7 (a very great extent), with 0 selected if the situation does not apply.A mean score is calculated for each domain, with higher scores indicating greater family-centered care.

Sociodemographic Characteristics (8 Items)
Participant gender, age, educational attainment, marital status, gross annual household income, birth country, language primarily spoken at home, and number of children were assessed using standard items.Household income was compared with the Australian national average of A $120 000 (US $85 700) per annum. 34

Clinical Role (7 Items)
Assessed primary clinical role, years of CHD-specific experience, work hours per week, days on call in the past month, shift work, work area, and employment status (permanent, fixed-term, casual).
Work area was categorized as intensive (including pediatric and neonatal intensive care units and operating suite), or nonintensive (including cardiac ward, outpatient clinic, catheterization laboratory, office).

Burnout (22 Items)
Three well-established burnout dimensions were assessed using the validated, widely used Maslach Burnout Inventory (MBI): emotional exhaustion (9 items; α = 0.91), depersonalization (5 items; α = 0.78), and personal accomplishment at work (8 items; α = 0.77). 35Participants rated statements regarding job-related experiences over the past year from 0 (never) to 6 (every day).Percentage of endorsement of key items and mean scores for each dimension were calculated, with higher scores for emotional exhaustion and depersonalization, and lower scores for personal accomplishment, indicating greater burnout.Using the validated Jefferson Scale of Empathy (20 items; α = 0.81), 36 participants indicated agreement with 20 statements from 1 (strongly disagree) to 7 (strongly agree).After reverse scoring of specific items, a total score was computed, with higher scores indicating greater empathy in health care.

Resilience (6 Items)
Resilience was assessed using the validated Brief Resilience Scale (6 items; α = 0.82). 37Participants indicated agreement with 6 statements on a scale from 1 (strongly disagree) to 5 (strongly agree), with higher scores indicating greater psychological resilience.

Coping (18 Items)
Nine subscales of the Brief COPE (18 items) 38 were used to assess the frequency of coping responses to work-related difficulties, with responses ranging from 1 ("I don't do this at all") to 4 ("I do this a lot").Two mean scores were calculated using the Eisenberg classification for coping styles 39 : (1) approach-based coping (α = 0.69), including active coping, positive reframing, and acceptance, and (2) avoidance-based coping (α = 0.71), including self-distraction, denial, substance use, behavioral disengagement, venting, and self-blame.

Perceived Social Support (5 Items)
Using the validated Social Provisions Scale (SPS-5) (5 items; α = 0.87), 40 participants rated statements about the extent to which they felt supported in their current personal and professional relationships from 1 (strongly disagree) to 4 (strongly agree), with higher scores indicating greater perceived social support.

Work-Family Conflict (5 Items)
Using the validated Work-Family Conflict scale (5 items; α = 0.95), 41 participants rated statements from 1 (strongly disagree) to 7 (strongly agree) to reflect the extent to which work disrupted family life and vice versa.Higher scores indicate greater conflict between work and family life.

Anxiety and Depressive Symptoms (4 Items)
Using the Patient Health Questionnaire (PHQ-4) (4 items; α = 0.84), participants indicated the extent to which they experienced anxiety and depressive symptoms in the past 2 weeks from 0 (not at all) to 3 (nearly every day), with higher total scores for each subscale indicating greater symptoms.
Scores of at least 3 on either subscale (anxiety, depression) indicate a need for clinical intervention and participants were contacted by a psychologist to provide support options.

Confidence Responding to Families' Psychosocial Needs (9 Items)
A purpose-designed measure was developed to assess clinicians' confidence responding to the psychosocial needs of patients and families (eg, talking with families about child neurodevelopmental outcomes, referring a child or parent to a psychologist).Responses ranged from 1 (not at all confident) to 5 (extremely confident), with 0 selected if the item was not applicable, and higher mean scores indicated greater confidence.This measure had excellent internal consistency (α = 0.90).

Mental Health Knowledge (7 Items)
Mental health knowledge wa assessed using a study-specific measure comprising 7 multiple-choice questions, each with 5 response options, including "I don't know" (eg, "According to Australian research, what proportion of parents meet clinical criteria for depression within one year after their baby's diagnosis of complex congenital heart disease?").Correct items were summed to yield a total score out of 7, with higher scores indicating greater mental health-related knowledge.

Psychosocial Characteristics
In the past month, 141 participants (67%) reported at least 1 symptom of emotional exhaustion, 62 (30%) reported at least 1 symptom of depersonalization, and 170 (80%) endorsed at least 1 area of personal accomplishment at work.There were 36 (17%) who reported anxiety symptoms and 21 (10%) who reported depressive symptoms warranting clinical assessment.Participants reported using approach-based coping (eg, positive reframing) more frequently than avoidance-based coping

Family-Centered Care and Confidence Responding to Families' Psychosocial Needs
Of the 4 domains of family-centered care, the mean (SD) score for treating people respectfully was higher than other domains (5.5 [0.9]; F = 78.5;df = 2; P < .001),followed by showing interpersonal sensitivity (4.9 [1.0]) (

Factors Associated With Family-Centered Care
Three hierarchical regression models were developed to identify factors associated with selfreported practice of family-centered care (

Mental Health Knowledge
Overall, out of 7 total points possible, the mean (SD) mental health knowledge score for the sample was 2.35 (1.56) points.Only 3 participants (1%) answered all 7 questions correctly.While 147 participants (69%) were able to identify symptoms of posttraumatic stress, less than one-quarter of clinicians correctly answered questions about the prevalence of postpartum depression in Australian women and men (Table 4).

Discussion
A family-centered approach is integral to providing high-quality pediatric care and achieving optimal child health outcomes. 1,3,12The practice of family-centered care can be challenging in congenital a Some percentages do not add to 100 due to missing data.
b Specialties: fetal or pediatric cardiology (n = 11), neonatology (n = 7), pediatric cardiothoracic surgery (n = 5), pediatric intensive care (n = 6), and anesthesiology (n = 7).heart settings due to the high medical acuity and intense psychological distress experienced by patients and families. 12,43,44In this study, Australian clinicians working in congenital heart settings generally perceived themselves as providing family-centered care a 'moderate' to 'fairly great' extent.

JAMA Network Open | Health Policy
Greater clinician confidence responding to families' psychosocial needs and lower burnout were associated with greater self-reported family-centered care practice, supporting our hypothesis.
6][47] Approach-based coping was associated with lower ratings of interpersonal sensitivity, highlighting how heavy workload, understaffing, and greater time on non-patient-facing tasks (eg, maintaining electronic health records) may cause clinicians to prioritize problem-solving over showing sensitivity to patients and families. 10,17In contrast, scores for treating people respectfully and showing interpersonal sensitivity were both positively associated with personal accomplishment at work.Literature shows that supportive, staff-focused environments with good team communication improve feelings of personal accomplishment and professional fulfillment for pediatric clinicians, which in turn increase parental satisfaction with care. 5,27,28,45,48nversely, insufficient training, high workload, and lack of organizational support and resources, are often identified by clinicians as obstacles to implementing family-centered care practices. 14,49,50A 2017 meta-analysis exploring the efficacy of interventions targeting physician burnout found organizational interventions (n = 5 studies) targeting workload, organizational structures, and team resources were more effective in reducing burnout than individual-focused interventions, such as mindfulness, cognitive-behavioral therapy, and exercise. 51Fostering a positive workplace culture is critical to addressing burnout [51][52][53] and may be achieved through increased work flexibility, a focus on team-building, and reduced administrative burden, as highlighted in the National Academy of Medicine's plan for health-workforce well-being and burnout prevention. 46,48,546][57] Pediatric cardiac trainees and nurses transitioning to congenital heart settings have reported fears of patient harm and a perceived inability to manage the responses of distressed families due to inadequate specialty-focused knowledge, skills, and training. 27,28,306][67] It also encourages understanding the diverse experiences and perspectives of patients and families through storytelling, 66 shadowing, 68 simulation exercises, 63 and familycentered rounds, 69 which can promote empathetic communication, cultural sensitivity, and reflective practices among clinicians.

Areas for Future Research
To build on these findings, an important next step would be to explore and compare patient and family perceptions of family-centered care in pediatric heart settings.A deeper understanding of clinical team processes and support needs may also improve multidisciplinary collaboration and family-centered care practices.Multicenter studies assessing clinicians' mental health knowledge, skills, and confidence responding to families' psychosocial needs will allow for comparability of results and highlight areas for education and training.

Limitations
This study has limitations.The cross-sectional study design precluded causal inference.Recruitment of clinicians, predominantly nurses and women, from an Australian health network during the COVID-19 pandemic may limit the generalizability of results, given Australia implemented stricter measures, such as domestic and international travel restrictions, diligent contact tracing, and lockdowns to suppress local outbreaks, in addition to social distancing and mask-wearing during the early stages of the pandemic, resulting in an initial lower COVID-19 caseload relative to some other countries. 70,71Clinicians experiencing greater psychological stress or workload demands may not have responded to the survey, potentially leading to an underestimation of the difficulties and needs of this population.The MPOC-SP assesses clinicians' perceptions of the extent to which their practice is family-centered rather than actual behaviors; however, mean scores of 4 (moderate extent) to 5 (fairly great extent) across the 4 domains suggests it is unlikely participants overestimated positive practices.The recruitment strategies and use of self-report measures could have led to response bias and socially desirable responding; however, the low scores for several measures (eg, confidence responding to families' psychosocial needs) suggest bias was minimal.

Conclusions
Family-centered care is a critical aspect of pediatric cardiac care and is associated with clinician burnout, coping, and confidence responding to families' psychosocial needs.This study identified gaps in clinicians' mental health knowledge and confidence, highlighting the need for strategies to improve clinician well-being, mental health knowledge, and confidence to not only benefit clinicians but to also strengthen family-centered care in congenital heart settings.
This cross-sectional study followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline.Participants were recruited from a large Australian quaternary hospital network, including the Children's Hospital at Westmead and the Sydney Children's Hospital at Randwick.Clinicians from diverse disciplines involved in caring for children with heart disease, who were contactable at the time of recruitment, were invited to complete 1 survey.Approval was granted by the relevant Human Research Ethics Committee (HREC/ 15/SCHN/95).JAMA Network Open | Health Policy Clinician Perceptions of Family-Centered Care in Pediatric and Congenital Heart Settings Recruitment Recruitment opened in June 2020 and closed in February 2021.Potential participants were identified via their hospital departments.A personalized invitation, detailed study information sheet, and customized link to the online survey hosted on the secure Qualtrics platform (Qualtrics) were sent to all eligible clinicians via email.A paper-based survey was provided to those who had not completed the online survey after 3 reminders.With support from department directors and team leaders, the survey was also introduced through information sessions which provided a brief overview of the study, consistent with the study information sheet.Recruitment strategies included distribution of customized cookies and chocolates, study flyers, and digital posters.Survey completion indicated informed consent.
While clinicians' confidence responding to families' psychosocial needs was positively associated with all 3 domains of family-centered care; overall, clinicians' confidence ratings were low, as was their mental health knowledge.This signals a need for further education and training to cultivate clinicians' knowledge, confidence, and skills in these areas.Research shows clinicians frequently underestimate the incidence of anxiety and depressive disorders in parents of children with heart disease, with adverse effects on parental participation in clinical decision-making and

Empathy Toward Patients (20 Items)
Clinician Perceptions of Family-Centered Care in Pediatric and Congenital Heart Settings

Results Response Rate and Sample Sociodemographic Characteristics Among
Clinician Perceptions of Family-Centered Care in Pediatric and Congenital Heart SettingsStatistical AnalysisStatistical analyses were performed using SPSS Statistics version 27.0 (IBM) or R version 4.1.3(RProjectfor Statistical Computing) from August 2022 to June 2023.Participants who completed less than 60% of the survey were excluded from analysis.Variables with missing data were computed as per instrument manuals.χ 2 tests of association were used to compare characteristics of study participants and eligible nonparticipants (eg, work role).Descriptive statistics (eg, mean [SD]) were used to explore sociodemographic, clinical role, and psychosocial characteristics.Differences in mean scores for each of the MPOC-SP domains were tested for statistical significance using a repeated measures analysis of variance (ANOVA) with a Greenhouse-Geisser correction.42Apaired samples t test was used to compare mean scores of the 2 coping subscales, while differences in mean confidence scores for each clinical group were tested for significance using ANOVA.
variables, giving a total required sample size (N) of 157.Selection of correlates in the regression model was based on theory and published evidence.Correlates were grouped into 4 blocks and entered into each model in the following order: (1) sociodemographics, (2) clinical role characteristics, (3) psychosocial factors, and (4) clinician confidence responding to families' psychosocial needs.Multicollinearity among correlates was checked by computing the variance inflation factor (VIF) for each model after addition of each block of correlates.Assumptions of normally distributed residuals and homogeneity of residual variance required for linear regression were checked for each model using residual plots.While there was some collinearity between years of CHD-specific experience and age, anxiety and depression, and anxiety and emotional exhaustion, no included correlate had a VIF greater than 5 in each final model.The proportion of variance in self-reported family-centered care explained by each block was evaluated by computing the change in R 2 for each model.All tests and confidence intervals were 2-sided, and statistical significance was defined as P < .05. 212 clinicians who participated (response rate: 55% [212 of 387]), 153 (72.2%) were nurses, 32 (15.1%) were physicians, 22 (10.4%) were allied and mental health professionals, and 5 (2.3%) were surgeons; 177 (84.3%) were women, 170 (80.2%) were aged 20 to 49 years, 146 (70.4%) were married or in a relationship, and 149 (70.9%) were Australian-born (Table1).The mean (SD) length

Table 3
). Factors associated with showing interpersonal sensitivity (model 1) included greater confidence responding to families' psychosocial needs (β,

Table 2 .
Self-Reported Practice of Family-Centered Care, Psychosocial Characteristics, and Confidence Responding to Families' Psychosocial Needs (N = 212)

Table 3 .
Hierarchal Regression Models to Identify Correlates of 3 Domains of Family-Centered Care

Table 3 .
Hierarchal Regression Models to Identify Correlates of 3 Domains of Family-Centered Care (continued)

Table 4 .
Clinician Knowledge of Mental Health (N = 212) Adverse childhood experiences (ACES) can include abuse, neglect, and exposure to domestic violence, parental mental illness, or incarceration.Compared with children who have not experienced any ACEs, children who have been exposed to 5 or more ACEs are how much more likely to attempt suicide at some time in their life?